David
Thanks for advice, I like your signature back to 100 miles a week I will be chasing this measure? Are USA miles shorter than British miles.
I have been really pleased with the NHS I think I get a pretty good care package. How did you get through without a PEG any good reciepes from anyone what can be liquidesed and sqeezed through a PEG as I am only taking water all other food stays in my mouth and encourages ulcers and rotting smells?

Not sure if I said this before - pick up a waterpik if you can - the deluxe version has a tongue cleaner - use Luke warm water mixed with a small amount off non alcoholic mouthwash, or the salt water, baking soda mix - put it on the lowest setting, and shoot the water around your mouth. This cleans out the guck, freshens your mouth, and is great for oral hygiene - the tongue attachment is the best as you can direct it under your tongue and into all the small spaces food can hide. Plus it's a defuse squirt of water. The other heads are great at cleaning around the gums - and getting rid of plaque. Good luck.

Cuban Keith,

Of course U.S. miles are bigger, and longer and tougher! lol

I got thru w/o a PEG because 1. I was given the option of getting one or not; 2. I was stubborn; 3. I was stupid and 4. They made me get a nasal tube 2 weeks post Tx which I used for 2 weeks and it saved my butt! Now knowing all of this I still wouldn't get one today but I would have allowed them to install the nasal tube sooner.

I have been given the weekend to decide whether or not to participate in this trial. i am so lost. As of now I am leaning toward NO. I have a one month old baby and i'm reluctant to "try" something new. i want something proven.
i also have to make a decision on a feeding tube. i'm scared to get put to sleep again. my tumor is in a position that will not allow a breathing tube oraly, they have to go through my nose and it is still sore from the biopsy. FILL me full of all the knowledge i know this website is possible of doing..lol.
feel free to pm me if you have some personal oppinions that you would rather not share on a board.

Hi Jamos

Sorry for the late reply but have been offline for the past couple of weeks and am just catching up.

I appreciate and understand your dilemma regarding choice between "standard of care" - cisplatin (CIS) and "new kid on the block" -Erbitux (cetuximab - CTX).

Alex and I faced the same dilemma and although we opted for CIS because it was the devil we knew at the time (long term results for CTX were not available), I think our decision may have been different if the CTX results had been available and we had been offered a clinical trial.

CTX IS proven as initial treatment in head and neck cancer and IS indicated for use in your situation although your US guidelines may only recommend it for use in patients for whom CIS is not an option (someone might chime in here and clarify please?). CTX has been used for years in other cancers and was first used in H&N for metastatic and recurrent cancer. This is fairly standard for new treatments to be tried in "difficult" patients.

Whilst CTX has been shown to be effective in head and neck cancer, there are less data than CIS in initial treatment and the scientists/clinicians don't know which is the more effective because they have never been compared. RTOG 1016 is designed to compare the two treatments in terms of effectiveness and side effects.

The advantage of entering a clinical trial is that you will be more closely monitored than the general population and I think the trial funders will pay for the tests that are required (they do in Australia anyway). Generally speaking, people who are in clinical trials do better because of this as there is less tendency for your issues to slip through the cracks.

Remember too, that if you enter the trial, there is an equal chance you will end up on CIS as CTX so you need to be comfortable with either treatment.

Again, I appreciate your dilemma as you need to look to preserving your own future but please consider the advantages of being followed up and monitored with all the latest tests and scans. Also, talk to your doctor to understand your options if you were to be allocated to one treatment arm and don't do well. Find out how they will be monitoring you early in treatment and under what circumstances might they withdraw you from the trial. The answer may reassure you. Your doctors are obliged to treat you and there will be a clause in the protocol that details how to proceed should you need to withdraw from the allocated treatment for any reason. They cannot make you continue in the study if you think you are not doing well. You can withdraw your consent at any time, exit the trial and continue with treatment as negotiated by you and your doctor.

Do the patients get to know what the treatment is once it has been allocated (your doctor might have described this as open label)?

Jamos

You do not have to be put to sleep to get a feeding tube. If you want a PEG, then you should get it. While I vigorously defend a poster's decision not to get a PEG and that was my personal choice the first time around, you should make the feeding tube choice on what's best for you and what matters to you. It's always easier to agree with your doctor.
Again, I have been wide awake now for over 10 feeding tubes inserted even the first one that was done in "surgery" with a fluoroscope. They can give you a sedative but you don't have to be" put to sleep "(ooh, I hate that term, sounds like when the vet puts an animal down).
Charm

I got to speak to a doctor again Friday and he explained how both treatments were proven. He explained the if I had kidney problems or heart problems CTX would likely become my standard of care. I felt more at ease with the drug being capable of doing the job.

I have opted for standard of care and I am going to get a tube.

I was told to make a decision and move forward whatever it may be. Don't second guess and no regrets. I like that advice and I belive I am going to follow it.

The choice I made came from my heart and feels right. My wife and family support me.

thanks for all the PM's and replys.

Have a blessed Sunday.

Josh

[quote]I was told to make a decision and move forward whatever it may be. Don't second guess and no regrets.[/quote]

The most important advice you will ever receive in my opinion.